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Our visit with Dr. Bouboulis


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I would also like to warn against the Singular, last year there was an article that came out about kids having psychotic symptoms while on it, .. if I find it, I'll post it, but you could do a search on the TS side, pretty sure its there.

 

I can attest to the Singulair warnings, my son was rxd Singulair when he was much younger, at age 5 and I had no idea why he was having these horrible night terrors-psychotic dreams. He would wake up screaming, swatting at things that weren't there. When we stopped using the Singular, they stopped.

 

Here is just one warning:

 

http://www.aboutlawsuits.com/singulair-sui...engthened-4356/

 

Linda

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In previous posts there were ?'s about whether or not Dr. B. actually orders the IVIG or takes the orders from other docs. Does he order them too?

 

 

I believe he was willing to help some of these PANDAS kids and so did immuno testing to look for any immunodeficiencies, and then he could treat with IVIG and hopefully have it covered. I'm not clear if he is doing monthly based on the immunodeficiencies or if he is now following Dr. K's protocol, I think 'Alex' here asked Dr. B. to consult with Dr. K.?

 

I still wonder if there is any difference (re outcome) in the kids that have deficiencies as opposed to those that don't, I mean, not all PANDAS kids do. :)

Edited by faith
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We traveled to Ct today to see Dr. Bouboulis. He was very thorough and very kind. He listened to our story and looked into my dd's nose and said she has a sinus infection. (assumed to be strep in the sinuses) She has no symptoms of a sinus infection other than PANDAS symptoms. He continued her on Azith and Augmentin, did a steroid taper, and gave us stuff to rinse her sinuses with. One is called a hypertonic spray to spray in her nose 3 to 4 times per day and the other is a sinus rinse to be done twice per day.

 

He also did some allergy testing on her which she had a few positives to which we will address with allergy meds (singulair) and trying to remove allergens from our home. The allergies contribute to swelling in the sinuses which make it a great place for bacteria to grow. (one of her allergies is dust mites which can be killed in sheets by washing in very hot water or putting 1 tsp of euclalyptis oil in the water.)

 

He also put her on Diflucan for the duration of the time she is on antibiotics to keep yeast at bay.

 

He also ordered a host of blood tests to see how her immune system is working. He felt she was a good candidate for IVIG since her symptoms are so severe and she has had this for so long. (almost 4 years)

 

Overall, it was a VERY positive experience. He was caring and kind and extremely knowledgable. I am looking forward to working with him to make our dd well. He felt that she WILL get well.

 

I'm still on the road and don't know if I'll have time to respond much till Friday but I'll answer any questions when I get home and have a few minutes.

 

Angela

 

Angela,

You say the doc thinks your son has a sinus infection, or that he definitely does? he could tell just by looking in there? And he has no symptoms tho, sinsus pressure, mucious, nasal talk, whatever? If your son has this, I would go to an ENT to check it out.

 

I would also like to warn against the Singular, last year there was an article that came out about kids having psychotic symptoms while on it, .. if I find it, I'll post it, but you could do a search on the TS side, pretty sure its there.

 

Faith

faith,

dr. b looked up her nose and said she definitely had a sinus infection. Why and ENT when he is treating her for it? Just wondering if you know something I don't. Never had a sinus infectino before.

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In previous posts there were ?'s about whether or not Dr. B. actually orders the IVIG or takes the orders from other docs. Does he order them too?

 

 

I believe he was willing to help some of these PANDAS kids and so did immuno testing to look for any immunodeficiencies, and then he could treat with IVIG and hopefully have it covered. I'm not clear if he is doing monthly based on the immunodeficiencies or if he is now following Dr. K's protocol, I think 'Alex' here asked Dr. B. to consult with Dr. K.?

 

I still wonder if there is any difference (re outcome) in the kids that have deficiencies as opposed to those that don't, I mean, not all PANDAS kids do. :unsure:

 

I didn't actually ask Dr. B to consult with Dr. K. I called Dr. K after we started monthly IVIG because although I thought and still think that Dr. B is fantastic, he was fairly new to treating PANDAS, and Dr. K has been doing it for years. I wanted to run the treatment we were giving our son by Dr. K to get his opinion. His opinion was that it was wrong to do monthly low dose for PANDAS and he told us that several other families had contacted him concerning the same subject. I was told later by one of the other parents involved that Dr K. and Dr. B had spoken and that it was Dr. K who initiated contact becasue he feels so strongly about this subject.

 

The doctor I did ask to consult with Dr. K was Dr. Trifilletti because their approaches to PANDAS seemed so different, and they are so prominent in the treatment of PANDAS that I hoped they would consult with each other and find some common ground. I felt we parents were getting some mixed messages with one of them opting for IVIG (in certain cases) relatively quickly, and the other attempting all sorts of antibiotics for an extended period. Don't know if they have talked but apparently a lot of the big PANDAS doctors will be getting together to compare notes this summer, so hopefully there will be a more unified apporach for treating PANDAS in the near future.

 

Angela, so glad you had a good appointment with Dr. B. Good luck with all the testing and with insurance coverage for IVIG if you go that route.

 

Alex

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We traveled to Ct today to see Dr. Bouboulis. He was very thorough and very kind. He listened to our story and looked into my dd's nose and said she has a sinus infection. (assumed to be strep in the sinuses) She has no symptoms of a sinus infection other than PANDAS symptoms. He continued her on Azith and Augmentin, did a steroid taper, and gave us stuff to rinse her sinuses with. One is called a hypertonic spray to spray in her nose 3 to 4 times per day and the other is a sinus rinse to be done twice per day.

 

He also did some allergy testing on her which she had a few positives to which we will address with allergy meds (singulair) and trying to remove allergens from our home. The allergies contribute to swelling in the sinuses which make it a great place for bacteria to grow. (one of her allergies is dust mites which can be killed in sheets by washing in very hot water or putting 1 tsp of euclalyptis oil in the water.)

 

He also put her on Diflucan for the duration of the time she is on antibiotics to keep yeast at bay.

 

He also ordered a host of blood tests to see how her immune system is working. He felt she was a good candidate for IVIG since her symptoms are so severe and she has had this for so long. (almost 4 years)

 

Overall, it was a VERY positive experience. He was caring and kind and extremely knowledgable. I am looking forward to working with him to make our dd well. He felt that she WILL get well.

 

I'm still on the road and don't know if I'll have time to respond much till Friday but I'll answer any questions when I get home and have a few minutes.

 

Angela

 

Angela,

You say the doc thinks your son has a sinus infection, or that he definitely does? he could tell just by looking in there? And he has no symptoms tho, sinsus pressure, mucious, nasal talk, whatever? If your son has this, I would go to an ENT to check it out.

 

I would also like to warn against the Singular, last year there was an article that came out about kids having psychotic symptoms while on it, .. if I find it, I'll post it, but you could do a search on the TS side, pretty sure its there.

 

Faith

faith,

dr. b looked up her nose and said she definitely had a sinus infection. Why and ENT when he is treating her for it? Just wondering if you know something I don't. Never had a sinus infectino before.

 

Hi Angela,...

well, I don't know, you say no symptoms and she's never had one before, so I'm just kind of wondering how there would be no symptoms of pressure or headache or even mucous, if it was so obvious just by looking up there? no endoscope? just with a light? You already have her on abx, right? So is there strep there or is it just speculation? Is the inflammation due to allergies or strep? both can cause inflammation, but is it inflammed because of allergies, or is it inflammed because of strep? I'm not understanding how decreasing inflammation that one is not bothred by, will help PANDAS or neuro symtpoms. If there is definitely something there, I think you should see an ear, nose and throat doctor to follow up.

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When my son had a sinus infection he wasn't bothered at all by it. I only suspected it since he had an on and off cold for so long. The ped believes his may have been caused by allergies, but it was still infected and he still got antibiotics for it. After the first round, it was still there so Flonase was added to the Augmentin to help drainage.

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You know, I've seen parent after parent on here report that their PANDAS kids were diagnosed with sinus infections, often triggering exacerbation. I started a thread on it at one point because it seemed so commonplace. My son has complained of congestion since this PANDAS nightmare started, an MRI showed signs of sinus infection, and our local doc diagnosed sinus infection for him a couple of times (but of course would only prescribe the 5-day zithro Z packs).

 

Coincidentally, I've had persistent congestion and sinus issues for several years now... and my ASO titer recently came back at 303.

 

I'm really curious as to whether there's a particularly nasty, virulent, hard-to-reach and hard-to-kill strain of GAS that likes to hang out in those damned sinus cavities!

 

 

When my son had a sinus infection he wasn't bothered at all by it. I only suspected it since he had an on and off cold for so long. The ped believes his may have been caused by allergies, but it was still infected and he still got antibiotics for it. After the first round, it was still there so Flonase was added to the Augmentin to help drainage.
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Worried Dad, I found out that I was the carrier in our family about the same time you did.

 

For the past 4 years-- since my PANDAS son first got sick-- I've had a chronic sinus infection.

I've been on augmentin 875 twice a day for the past three weeks. I'm really hoping this will smooth my son's recovery.

 

Have you noticed any more improvements in your son since you started taking abx?

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Hi Angela,...

well, I don't know, you say no symptoms and she's never had one before, so I'm just kind of wondering how there would be no symptoms of pressure or headache or even mucous, if it was so obvious just by looking up there? no endoscope? just with a light? You already have her on abx, right? So is there strep there or is it just speculation? Is the inflammation due to allergies or strep? both can cause inflammation, but is it inflammed because of allergies, or is it inflammed because of strep? I'm not understanding how decreasing inflammation that one is not bothred by, will help PANDAS or neuro symtpoms. If there is definitely something there, I think you should see an ear, nose and throat doctor to follow up.

Well, he didn't test her for strep but said her sinuses were definitely infected when he looked with one of those things you look into noses with that has a light on it. about the symptoms, well she has had head aches off and on for 3+ years but not the typical green snotty nose that I think of when I think of sinus infections.

 

Decreaseing inflammation will help to make the sinuses less of a likely place for bacteria to grow, was my understanding. It isn't going to stop the autoimmune aspect. That is what IVIG is for. It may make her less likely to get another infection if we keep the allergies from causing inflammation.

 

Thanks for the comments. I appreciate them.

Angela

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Be careful with Singulair. It has a black box warning for the way it affects kid's behavior/depression, etc...Just observe for any changes, and the changes may not happen right away. Just watch...

 

My son took singulair for a couple years. It is hard to say just how impacted he was by it b/c he was in and out of pandas episodes during that time. But I will say this...he had night terrors and leg cramps among other issues that I cant' remember right now. they went away the instant I stopped singulair. also noticed an improvement in behavior when i stopped it. I have to tell you that my son no longer needs those allergy/asthma meds now that I took dairy out of his diet and added some basic supplements to boost his immune system. Dairy products cause congestion in many people. After I saw the improvement, I stopped eating dairy as well and now I am off all my meds, too!

 

Stephanie

 

We traveled to Ct today to see Dr. Bouboulis. He was very thorough and very kind. He listened to our story and looked into my dd's nose and said she has a sinus infection. (assumed to be strep in the sinuses) She has no symptoms of a sinus infection other than PANDAS symptoms. He continued her on Azith and Augmentin, did a steroid taper, and gave us stuff to rinse her sinuses with. One is called a hypertonic spray to spray in her nose 3 to 4 times per day and the other is a sinus rinse to be done twice per day.

 

He also did some allergy testing on her which she had a few positives to which we will address with allergy meds (singulair) and trying to remove allergens from our home. The allergies contribute to swelling in the sinuses which make it a great place for bacteria to grow. (one of her allergies is dust mites which can be killed in sheets by washing in very hot water or putting 1 tsp of euclalyptis oil in the water.)

 

He also put her on Diflucan for the duration of the time she is on antibiotics to keep yeast at bay.

 

He also ordered a host of blood tests to see how her immune system is working. He felt she was a good candidate for IVIG since her symptoms are so severe and she has had this for so long. (almost 4 years)

 

Overall, it was a VERY positive experience. He was caring and kind and extremely knowledgable. I am looking forward to working with him to make our dd well. He felt that she WILL get well.

 

I'm still on the road and don't know if I'll have time to respond much till Friday but I'll answer any questions when I get home and have a few minutes.

 

Angela

Edited by Stephanie2
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I'm hoping, too... but haven't noticed a difference yet, even in my own sinus symptoms. The local doc was only comfortable writing me a script for the "standard" zithro dose, so I'm only on 250 mg a day. Sigh.... Not sure it's working. I'd love to try augmentin, but I had an allergic reaction to amoxil about a decade ago so can't use any of the penicillin-based abx.

 

Good luck, Bronx Mom. Hope the augmentin does the trick for you and your ds!

 

 

Worried Dad, I found out that I was the carrier in our family about the same time you did.

 

For the past 4 years-- since my PANDAS son first got sick-- I've had a chronic sinus infection.

I've been on augmentin 875 twice a day for the past three weeks. I'm really hoping this will smooth my son's recovery.

 

Have you noticed any more improvements in your son since you started taking abx?

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I'm hoping, too... but haven't noticed a difference yet, even in my own sinus symptoms. The local doc was only comfortable writing me a script for the "standard" zithro dose, so I'm only on 250 mg a day. Sigh.... Not sure it's working. I'd love to try augmentin, but I had an allergic reaction to amoxil about a decade ago so can't use any of the penicillin-based abx.

 

Good luck, Bronx Mom. Hope the augmentin does the trick for you and your ds!

 

 

Worried Dad, I found out that I was the carrier in our family about the same time you did.

 

For the past 4 years-- since my PANDAS son first got sick-- I've had a chronic sinus infection.

I've been on augmentin 875 twice a day for the past three weeks. I'm really hoping this will smooth my son's recovery.

 

Have you noticed any more improvements in your son since you started taking abx?

I'm interested in this, too, as it seems our whole family has . . . in the last 10 years or so . . . become more and more perpetually "stuffy" and in need of help with over-the-counter stuff like Sudafed and Benedryl. I've personally gotten so used to it, that I don't pay much attention to it anymore. But then I see all your posts about strep in the sinuses, and it makes you think . . . . .

 

I had an holistic doctor tell me that strep likes to "hide" in the sinuses very early on in our PANDAS experience, but then I had a couple of subsequent doctors actually chuckle at me when I inquired about it with regard to DS. Guess I shouldn't let up, huh? With all the stuff we're all contending with, though, and having DS on abx almost solid for the last 6 months, how long could that strep survive in there?!?! Maybe a visit to an ENT is called for?

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